Lifslevande / Alive

                                   

As most of you know I suffer from a very rare congenital dissorder called Klippel Trenaunay Syndrome or KT alt. KTS. This is first an formoste a vascular malformation.
I just realised that I haven't been explaining to much about this condition to the once of you who doesn't know me well or who are KT:er them self. It's hard to fins facts that are easy to understand so I "nicked" some good, layman facts from KT organisations web page www.k-t.org .

Symptoms

The K-T syndrome is a rare congenital malformation that may include the following:

• Port-wine stain or “birthmark” (cutaneous capillary malformations)
• Soft tissue and bony hypertrophy (excessive growth of the soft tissue and /or bones)
• Venous malformations & lymphatic abnormalities

Complications may include bleeding, cellulitis, venous thrombosis, or pulmonary embolism. Associated abnormalities in other systems, such as gigantism of toes, hand and feet anomalies, lymphedema, or involvement of the abdominal and pelvic organs may also occur.

K-T usually is limited to one limb, but may occur in multiple limbs and/or head or trunk area. Internal organs may be involved. Each case of K-T is unique and may exhibit the above characteristics to differing degrees.

There is no known “cure” for the K-T Syndrome.
http://k-t.org/?page_id=28

This link takes you to a printable leaflet http://k-t.org/wp-content/uploads/2010/02/KTSupport-Informational-Brochure.pdf

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Life with KT is no walk in the park. Being back from the Proteus and KT Family Weekend in England, makes me realise what a pain in the ass (excuse my French...) KT really is!! In many of the leaflets you read, doctors articles and so one, you can read that most KT:ers lives a healthy life with not to many symptomes from their KT and that they are expected to live lives of a normal lenght. Up my ***!!! To all my KT friends cross the globe life is a struggle! Most of us suffer from minor bleedings at least once per month, many of us suffer from migraines, joint problems, overgrowth to an extent that it's difficult to find clothes and shoes that fits. Most of us suffer from pain that is so difficult to live with that we need medications that are quite strong.

I don't know a KT:er that can hold a full time job, I don't know a KT:er that is able to manage through a whol day withouth a rest, elevating their legs and let their bodies wind down. We suffer from high or/and low blood pressure, heart problems and blod clots. Most of us have had at least one DVT (deep vein trombosis) and quite a few of us have been rushed to hospital because our doctors have suspected a clot that could travel to our heart or lungs.
My family knows that when I speak about cellullitis I don't talk about the uneaven surfaces on your thigh that women always complain about and call fat- no cellullitis in the world of a KT:er means a painful inflamation in our veins. The area of the inflammation is read, warm to the touch and very painful. Most of the times I get a feever. It requiers mediaction, rest and a great deal of strenght!!

So, please- don't come and tell me that KT is a mild syndrome and please burn those broshures that says that KT is a birthmark!!!

I don't meen to sund agressive or anything. It's just that I'm so fed up with those doctors , and other medical stuff, who have never, ever heard about KT much less meet a patient with the syndrome who thinks that what they read on the internet or in leaflets is the absoulte truth about KT!
I have been questioned so many times and when I was younger and less educated about my illness, I did believe what the dr's told me. The first false truth that a doctor told me was that vascular malformations can't hurt. Yes they can! And they can hurt a great deal. I went for many years believing that the excruciating pain I lived with every day was just normal. I thought that the side effects of fattigue, depression and anger- well, that was just me! Eeeerrr, death wrong! I was well over 20 when I found a anastethist that gave me the propper pain relief.

Another of the truths that a dr has told me was the KT never changes. It is the way it is when you are born and nothing ever happens to it. That was just so fataly wrong and I hope he gave my parents that information out of ignorance and that it wasn't a lie!
KT does change! It does move about in your body, it does caus problems and god does it make life difficult. I have one of the more agressive kinds of KT and I'm happy every single day when I can talk walks with my little Louis, when I can manage to take care of myself and our little flatt!

I believe that many of the healthproblems that I have is conected to KT. At the meeting in Stratford-upon-Avon I realised that I was not the only one with multiple healthproblems AND KT. I did also realice that there were other KT:ers, and Proteus patients, that believes that there is a conection between KT and those problems. I mean, KT changes such a huge part of our abatomy. It would be strange if there wouldn't be more things going wrong- really.
It's not as you might think, it's not at all scary to think like this! I find it a great reliefe if it would be a conection because it would save other KT:ers the problems that I have had. It might be so, that KT:ers ar prone to migraines, high or/and low blood pressure and joint pain. If that were so, we could get better treatment. Instead of dr's saying to us- as they did to me, that it's all in my head! There's no way your body can deteriorate in my HEAD!!!
What I'm trying to say is, that I'm happy that other sufferers had the same thinking as I do. So, the Family Network gave me a little task. That is to, together with Michelle or KT contact, a survey to see if there is a red thread between KT:ers, adn Proteus patients.

I shall not write more now! Louis needs a little weee before I'll have som tea and cheese.

                            

I have had a lovely weekend with my mum! She came to visit Louis and me and she stayed over from Saturday til Sunday. I tried to spoil her so I had pre-made a solmon. mossarella and vegetable paj that we had for lunch yesterday. Then I bought sushi for us to have infront of the TV Saturday evening. We had a lovely time together- even if mum helped me to clean a bit. I can't do the heavy things such as vaccum, carry things and lift boxes. What I needed was to sort my clothes and books out! I have lived in this appartment for a year now and needed to sort the things, I don't really use, out. It's so much more airy now! THANK YOU MUM!!! I don't know what on earth I would have done without my mother, she helps Louis and me so much!

I really hope you didn't find my text today to angry... I just want my blog to be a place where I try to get people to understand how it is to live a life with such a rare kondition as Kilppel Trenaunay is. I also want you all to SEE that it IS possible to live a wounderful life, even if I have to fight a bit more than the averrage person ;-) to get my will.
It would be nice to know if anyone of you have had the same, or similar, problems as I have had- with drs!

Love
xxx